I did the same when I saw this on Facebook today, and noticed that a couple of others posted it without removing Trigeminal Neuralgia, or Atypical Trigeminal Neuralgia, which I added.
Any little bit helps to spread awareness . . . .
Best regards,
Stef
Jerry said:
Folks here is something that is making the rounds on Face Book:
"It's hard to explain to someone who has no clue. It's a daily struggle being in pain or feeling sick on the inside while you look fine on the outside. Please put this as your status for at least 1 hour if you or someone you know has an invisible illness (Anxiety, Bipolar, Depression, Diabetes, COPD, Emphysema, LUPUS, Fibromyalgia, MS, Arthritis, Cancer, Heart Disease, Epilepsy, Autism,TN, IBS, etc.) " Never judge what you don't understand."I know which of my real friends will copy"
I added the TN just so my friends would understand that I may "look fine" but it is a battle every single day.
I've thought of that, Min! I know you are probably right!
I remember my Dad used to tell me that the older you would grow, the smarter your parents would seem to you . . . .and wow, how much more I relate with both of them, and their personal struggles, as the years pass!
Thank you. :)
Min C said:
Pretty soon now Stef, you won't know anything either. Until she gets to be about 21, then your intelligence will return. Cuz at this age they start thinkin they know everything and we (as parents) know nothing! When this would happen to me with mine, I would say to them: Amazing how I got to be my age without knowing that... Or I would say, honey I been around the block a few more times, I think I know a little more about this than you do! LOL
Stef said:
Oh, I love you, Sheila. I never thought about it that way. Thank you for caring enough about me to make me feel better about my situation as a Mom.
((Huge Hugs))
Sheila said:
Stef,
You really are great to have the insight to realize that your 15 year old lacks a bit of foresight right now. EVERY 15 YEAR OLD IS EMBARASSED BY THEIR PARENTS, so your illness doesn't make you any different. lol. Also, now that I am on the other side and my girls are having their own children, I can see that because they had to do more around the house due to my illness, they now have more homemaking and coping skills than their peers, and spend a lot of time teaching others how to do the very basics like cleaning and meals and even interacting socially.
I always tell people to "Google Atypical Trigeminal Neuralgia". After years of being misdiagnosed with TMJ, I was researching one night, ran across ATN and it's symptoms in Wikipedia. Silent tears began when I was almost done reading and murmured, "that's me".
People who know us should really read about this illness, otherwise, they will never understand us.
ClefTreble said:
I just joined this site earlier today due to return of TN last week...I was dxed back in May I believe but thought it was related to something else since it seemed to quit after I had sinus surgery...but it is back and with a vengeance...I am a soprano singer/ musician that works as a church Liturgist/Cantor/ Musician. I worked this past weekend in the throes of all this madness and my accompanist was so astonished Saturday night at how well we did, she said no one would have ever known that you are in the worst pain of your life! I am now telling people around me to "google" this condition to learn about it. I have a question...does this thing ever affect anybody's voice? I struggled a wee bit but fought that off this weekend...I will not accept people who say "it is all in your head"...tell them to "google" it and then come back and tell me it is all in my head! For comic relief here....it is all in my head...the left side of my face! But it is maddening....
Hi Stef. Long time since I have been on this site. "You look fine, or sound fine" are just as much of a blow as any inconsiderate words I have had spoken to me.
Unfortunately, my immediate family falls into the "you look fine" category and a few childhood friends who have said "is it all in your head?" No pun intended.
The phrase I hear more often is "you sound fine" as living on my couch necessitates use of the phone in order to keep in touch with the world. I have had numerous friends/family ask this question, last week for instance. I change my reply all of the time... Last week I replied, "yes I do. However, my face feels like it is going to explode right now and talking to you on the phone is helpful in distracting me from the pain."
I often feel like sounding sick on the phone, perhaps talking in a low voice, plugging my nose while talking or perhaps bursting into forced tears? Sometimes I go as far as to wear my scarf over my face when I go to meet with my family or those friends who have been critical even if my face pain is minimal. At least, I look "visibily" ill and am also showered with complements like "you look like Jackie O. or a celebritity." I have also been asked about my religious preference, a weird comment considering the personal nature of the question.
I have had a breakdown in 3 friendships over this very issue.... mostly for the reasons or insensitive questions listed above. I do understand the inability to understand or comprehend an invisible illness and try to maintain composure when told "you look fine." However, my tolerance level is slowly diminishing after 3 years.
I come to this site, though not in a while, for this reason among many. Finding those who are compassionate, kind and who believe you all in one place has been great. If all of our friends and family visited this site and read all of the words written by all the members here, maybe they would believe us as this many people cannot possibly have such pain "all in their head!"
Glad you found this site! I haven’t on in quite sometime and whenever I login and start reading I feel an immediate sense of comfort and compassion. While I have been frustrated by the lack of compassion from some of my friends and family I still have friends who make a herculean effort to keep up with me. Friends who bring take out lunch to my house as I can’t go out on a lunch date, friends who come and pick me up to bring me to their house and set me up with my own lounge space and are okay with me taking nap, a husband who is fantastic, and many more. It’s hard not to let those who question the validity of your illness seep into your mind and to forget those who make an effort to understand, research and learn more about your illness. Good luck to you and I hope that you find that many of your friends stick with you! Best. Johanna
wrigley said:
This whole thing (the condition itself, this site, these problems) is very new to me, so I greatly appreciate reading about what I can expect. I've already begun to experience some of these things as I've recently begun letting family and friends know what's going on.
On the one hand, I've been very fortunate: my primary doctor diagnosed me pretty quickly, and referred me to a pain specialist in the group, and the two of them have been very proactive and so far a treat to work with. Also, my wife is a hospice nurse and specializes in pain management, so she knows and understands many of the things I'm struggling with.
Here's the downsides I've experienced, from the social perspective, thus far: "Oh, you don't want to be on all those medications, you should just drink more water and exercise more (really? if that were the case I'd drink water by the gallon and quadruple my exercise routines ...)." "I've never seen you complain about this before ... (well, what's gained if I say my face feels like it's on fire while being stabbed with a screwdriver, all. day. long)." "I've never heard about this, but maybe if you tried to reduce your stress, it would go away (yes, we all should reduce our stress to be more healthy overall, but this is in a world all its own)."
Now, I haven't said any of the things in parentheses; yet. This is still new to me; I was prepared for a sprint and now realize this is a marathon that may never end. I worry that I don't have that type of stamina, and so I'm really worried that at some point, my social relationships may suffer. That being said, this site (which I only discovered yesterday) and this thread in particular are very helpful and I appreciate the opportunity to read other people's experiences. Up until I found this site, this whole "journey" has been incredibly lonely as I've never talked to someone socially who had even heard of it.
Sounds great, because hearing about illness endlessly tires everyone out. i love the idea of how your friends help. I needed the sitec deperately upon my return home from new york. I felt so alone and frightened of living like this forever. im here to talk or help in anyway. I feel like i know you in one reading. At least i will try to offer my help. just email. you are not alone, but its a lonely journey.
Johanna Smith said:
Glad you found this site! I haven't on in quite sometime and whenever I login and start reading I feel an immediate sense of comfort and compassion. While I have been frustrated by the lack of compassion from some of my friends and family I still have friends who make a herculean effort to keep up with me. Friends who bring take out lunch to my house as I can't go out on a lunch date, friends who come and pick me up to bring me to their house and set me up with my own lounge space and are okay with me taking nap, a husband who is fantastic, and many more. It's hard not to let those who question the validity of your illness seep into your mind and to forget those who make an effort to understand, research and learn more about your illness. Good luck to you and I hope that you find that many of your friends stick with you! Best. Johanna
wrigley said:
This whole thing (the condition itself, this site, these problems) is very new to me, so I greatly appreciate reading about what I can expect. I've already begun to experience some of these things as I've recently begun letting family and friends know what's going on.
On the one hand, I've been very fortunate: my primary doctor diagnosed me pretty quickly, and referred me to a pain specialist in the group, and the two of them have been very proactive and so far a treat to work with. Also, my wife is a hospice nurse and specializes in pain management, so she knows and understands many of the things I'm struggling with.
Here's the downsides I've experienced, from the social perspective, thus far: "Oh, you don't want to be on all those medications, you should just drink more water and exercise more (really? if that were the case I'd drink water by the gallon and quadruple my exercise routines ...)." "I've never seen you complain about this before ... (well, what's gained if I say my face feels like it's on fire while being stabbed with a screwdriver, all. day. long)." "I've never heard about this, but maybe if you tried to reduce your stress, it would go away (yes, we all should reduce our stress to be more healthy overall, but this is in a world all its own)."
Now, I haven't said any of the things in parentheses; yet. This is still new to me; I was prepared for a sprint and now realize this is a marathon that may never end. I worry that I don't have that type of stamina, and so I'm really worried that at some point, my social relationships may suffer. That being said, this site (which I only discovered yesterday) and this thread in particular are very helpful and I appreciate the opportunity to read other people's experiences. Up until I found this site, this whole "journey" has been incredibly lonely as I've never talked to someone socially who had even heard of it.
You are so right, I always explain to someone its like if I put a lighter to your arm?- you would pull away only you can get away from that lighter Im just going to keep it on your arm and you can never get away from it, that is how I decribe the pain in my jaw and then add in the screwdriver as you said and that totally hits the nail on the head of this horrific pain, it hurts so bad everyday no one can possibly know unless they experience this horrific pain. I just tried a trigeminal nerve block and unfortunately I got the worst outcome they offered my pain got worse, didjn’t believe them because before I got the block I didn’t imagine the pain any worse, well, I am in worse pain. Pain meds help as long as i take enough to just sleep-not much of a life- waiting on insurance approval for a nerve stimulator to be implanted in my jaw, specialist says this is the last resort for me, said they will have to shave part of my hair off, told them I didn’t care if they shaved my whole head if it will stop this pain. Hopeful thoughts and compassion to all
Please, please let me follow your story. Please share what happens with me.
I haven't had any nerve blocks. But, my condition has worsened since I began this post. Only a lot of medications take the lighter away. It's not fair. I'm trying Acupuncture soon, as I realize it's the only avenue I haven't been down.
I really, really want to know how the nerve stimulator works for you. I, as I'm sure many of us are, growing desperate for some sort of solution. (yes,I'd shave my head too!)
All the best on being approved and this working for you! Please let us know! Hang in there!
Stef
kwebster said:
You are so right, I always explain to someone its like if I put a lighter to your arm?- you would pull away only you can get away from that lighter Im just going to keep it on your arm and you can never get away from it, that is how I decribe the pain in my jaw and then add in the screwdriver as you said and that totally hits the nail on the head of this horrific pain, it hurts so bad everyday no one can possibly know unless they experience this horrific pain. I just tried a trigeminal nerve block and unfortunately I got the worst outcome they offered my pain got worse, didjn't believe them because before I got the block I didn't imagine the pain any worse, well, I am in worse pain. Pain meds help as long as i take enough to just sleep-not much of a life- waiting on insurance approval for a nerve stimulator to be implanted in my jaw, specialist says this is the last resort for me, said they will have to shave part of my hair off, told them I didn't care if they shaved my whole head if it will stop this pain. Hopeful thoughts and compassion to all
you hit it spot on with the lighter metaphor... I sometimes use the hot iron rod thats been left in the fire and I pull it out and jab it into your cheek and you cant pull away.. But I like your lighter one :-) because it is something most people have felt and can relate to.
Im sorry to hear your pain got worse from the nerve block. Its something you could never imagine happen ? A treatment which is designed to relieve you of pain actually makes it worse... There is so much they still dont know !
I hope the stimulator works for you :-) so that you may return to some quality of life again. It can take so much from us so its good for us to hear success stories once in a while ! You will be in my thoughts
Luke kwebster said:
You are so right, I always explain to someone its like if I put a lighter to your arm?- you would pull away only you can get away from that lighter Im just going to keep it on your arm and you can never get away from it, that is how I decribe the pain in my jaw and then add in the screwdriver as you said and that totally hits the nail on the head of this horrific pain, it hurts so bad everyday no one can possibly know unless they experience this horrific pain. I just tried a trigeminal nerve block and unfortunately I got the worst outcome they offered my pain got worse, didjn't believe them because before I got the block I didn't imagine the pain any worse, well, I am in worse pain. Pain meds help as long as i take enough to just sleep-not much of a life- waiting on insurance approval for a nerve stimulator to be implanted in my jaw, specialist says this is the last resort for me, said they will have to shave part of my hair off, told them I didn't care if they shaved my whole head if it will stop this pain. Hopeful thoughts and compassion to all
Thank you all, will keep you posted- they should know end of next week for approval, then going as fast as they will get me in- have not tried acupuncture Stef- however I used it in the past for other reasons and didn’t have any success but I wouldn’t say not to try as we all know we are willing to do and try just about anything to end this pain and get our life back, as far as the surgery if I am approved, they will implant the stimulator and leave the wire live for a try for 1 week with the stimulator and “if” successful you have a second surgery to implant the device (similar to a pacemaker) in your body- heres hoping for a successful option! will post as soon as I know! Thoughts of you all this evening -
Yes, keep us in touch about the nerve stimulator. I wish there was a way to try it out to see if it works before you go through surgery. I am wanting to try a hand held ultrasound gadget that has been effective in helping many types of pain but especially nerve pain. www.ezultrasound.com . I am still trying to talk them into letting me return it if it doesn't help me. People on disability can't take many financial risks. I think I'll post this somewhere else as well, to find out if anyone has been helped by ultrasound.
Just read this, oh my i sure needed a laugh today having a bad pain day....SF Bill that was hilariously correct!!!!!
Thanks again SF Bill said:
oh,
you're just a bunch of grumpy people. just take a few aspirins, get a good nights sleep and you'll feel better in the morning.get over it...and tell your dentist you're sorry those gold crowned,root canaled ,refilled extracted tooth procedures didn't work. Of course ,it was your fault for not taking proper care of them.And be sure to apologize for being a drug addict. We're weak and unworthy. stop your whining. suck it up. stop feeling sorry for yourself, do you realize what you're putting your family and friends through? pick yourself up and get back to normal. "Are you sure it's not a toothache?".
"Yeah, that must be it, Thanks and by the way x*!!-off!"
Bill, I have always loved Pink Floyd since I was very young. In fact, David Gilmour is my favorite artist. Since the TN tho, I relate to Comfortably Numb explicitly. Wonder how many other of us do too…
SF Bill said:
I checked out "Comfortably Numb" on you tube. I post this with trepidation. It's grim. It's disturbing. A somber, dark side of TN. I like Pink Floyd
i love pink floyd. we went to a concert in ft. lauderdale. amazing stuff. Min C said:
Bill, I have always loved Pink Floyd since I was very young. In fact, David Gilmour is my favorite artist. Since the TN tho, I relate to Comfortably Numb explicitly. Wonder how many other of us do too...
SF Bill said:
I checked out "Comfortably Numb" on you tube. I post this with trepidation. It's grim. It's disturbing. A somber, dark side of TN. I like Pink Floyd
I think I put the original post about Pink Floyd, but accidentially deleted it.....
The only non medicinal thing i found that helps me is music......I am a DJ at heart, so I guess I get into my zone while I am playing music......
Another song I relate to is Disturbed "Down with the Sickness", its a little loud and lewd, but the first 2 verses in that song, is almost how i feel during a attack......
boy, do I get it!!!! I even had a neurologist tell me, "you look good, learn to live with the pain!"
Problem is that I had "the" surgery (MVD) last July - and aside from two (2 - count 'em) whole days pain free since then, I have now increased the gabepentin to 2400 mg per day! My question to the neurosurgeon: when does that get toxic???
Some of my friends never ask me how I am feeling - just because the pain/scars/misery is not visible!!
In my opinion, pain is not a valid illness - just deal with it!
I never - ever - ever -ever dreamed I would be afflicted with trigeminal neuralgia (or ATN - if that's what I have) -- I'd rather have some form of cancer - that is treatable and in many cases, curable. I feel like my life is doomed - living with this pain is one thing, the side effects of the medication is another!
In searching for pain scale descriptors here is one from the RSD support group that provides the most widely used physian pain scale for clinical trials. They also incluced differnet types of pain on a scale for comparison.
Quite simply, it is an index, put into the form of a bargraph, comparing the various types of Chronic Pain with "Causalgia". Causalgia is latin for Burning Pain and the original term for RSDS and now CRPS. While all types of Chronic Pain are not listed, they were included in the study.
As you can see, RSD is far and away the most painful form of Chronic Pain that exists today . A huge 42 on the scale! Any of you that also have other forms of Chronic Pain can now see why their RSD pain dominates their mind and body so much.
Many have asked for a picture of the McGill Pain Index, so here it is. There are many versions out there. This one includes various types of childbirth pain as well.
This is a good tool to use with your loved ones to help them compare our pain with other diseases and problems in a form they can relate to.
It also helps you to see that you are NOT exaggerating your pain one little bit!
Feel free to make a copy of the McGill Pain Index for your own personal files.
Unfortunately, the jpg picture did not upload so you will have to see it at the internet address listerd above.
An upload is attached to send the entire two pages with the picture.
